Advancing Genomic Understanding in Prenatal Care with Patient Data Sharing
Official title: Advancing Perinatal Genomic Discoveries through Patient Engagement and Data Sharing
Funded at Geisinger Clinic · NIH-11392922 · Data updated 2026-11-12
A patient-facing project that helps families share and learn from prenatal genomic data to improve future diagnoses.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Geisinger Clinic NIH-funded |
| Lab location | 1 site (Danville, United States) |
| Project start | August 14, 2025 |
| Project end | June 30, 2029 |
| Funding year | 2026 |
| Award (this year) | $716,697 |
| NIH project number | 5R01HG013710-02 |
| Project ID | NIH-11392922 on NIH RePORTER |
Who could benefit from this research
✓Could help
Adults or guardians undergoing diagnostic fetal sequencing who are willing to share genomic and prenatal phenotype data.
✕Less likely to help
Pregnant individuals or families not interested in data sharing or with non-genetic pregnancy concerns may not directly benefit.
What this research studies
This project brings together experts to collect and standardize prenatal genomic and relevant clinical information from labs and clinicians. It offers tools for patients to engage with their own genomic data over time and receive updates about findings that may affect their pregnancy decisions. It also uses expert panels to review gene-disease links and variant interpretations to translate data into clearer, more precise prenatal results. The effort emphasizes education, consent, and ongoing patient participation to advance precision medicine in prenatal care.
Why it matters
Potential benefit: If successful, it could lead to faster, clearer prenatal diagnoses and better-informed decisions for pregnancies with fetal anomalies.
How similar studies have gone: Prior genomic-data-sharing initiatives have improved understanding of gene-disease relationships and variant pathogenicity in postnatal contexts; prenatal translation is a built-upon step.
Where this research is happening
-
Geisinger Clinic
Danville, United States Active
Researchers
- Principal investigator: Riggs, Erin Rooney — Geisinger Clinic
- Study coordinator: Riggs, Erin Rooney
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About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.